This was a stressful day

Aunt V got her first full 10 rounds of cancer stress yesterday. It never seems to be the big right hook that gets to you, rather it is the constant jabs that wear you down. So when someone willingly chooses to come live this life with us and take these punches with us...there is little doubt that their motive is genuine-out of love.

Christi started her day with aggravated with the world. She was miserable and chose to make all of her care givers share the pain. This is not her typical mode,however, even the Pope has a bad day right?

I was wanting to get her off some of her antibiotics when she spike the fever the night before. Because of that fever I was left with having to keep the antibiotics on as well as adding the antifungal.


To say I was ambivalent about added more medication is an understatement. The flow chart is: kid admits with fever-start broad spectrum antibiotics. If nothing grows in the blood cultures then reduce the antibiotics. If another fever occurs then resume broad spectrum antibiotics, draw new cultures, add antifungal. So that is where we were-my ambivalence was not enough to resist the new medication. It bothered me a even more that we had to premedicate to give the antifugal-Amphotericin B. She got Benedryll and Tylenol. While these are benign drugs it is just two more to a growing list. How much can a little body handle??? 30 minutes into the infusion Christi started shaking uncontrollably with rigors. We have never witnessed this sort of reaction. The infusion was eventually stopped and she was given demerol to regain control.

The solution offered is that we start a different antifugal which has fewer side effects. This was when my push back started on medications. I asked if we could give her a 12 hour reprieve from these heavy medications. Negotiations ensued and I lost based on better constructed arguments by the medical team.

Now as of 5 AM she spiked another fever (39.7c)which should again release a cascade of events leading to more medications throughout the day.

An interesting information morsel and another good reason why CHOP is one of the best is their handling of blood cultures. IF a kid gets a fever, they draw blood and put it in a glorified Petri dish to see what grows. They monitor and if something grows they give the child specific antibiotics. This is standard protocol anywhere, what is really cool here is that it is semi-automated. The dish is in a machine that looks at the culture every five minutes trying to detect change. If there is change an alarm sounds and a technician is notified.

After Christi finally recovered from her antifungal episode she started coming around a bit. Her and Aunt V had just assembled 3 100 piece puzzles when she managed to accidentally yank her needle out of her chest. She started leaking fluids and bleeding. Her concern of course was her pain and the fright of leakiness-my concern was losing the port. Fortunately, after a harrowing 30 minutes offset only by good nursing, we got her re-accessed and settled down.

When I went to sleep at 1:30 she was eating popcorn and watching a movie with Aunti V. So when the nurse woke me at 4:30 about the fever I was quite shocked. New cultures have been sent and counts are being checked. I will post more when this information is back in our hands.

Shayne